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Tuesday, August 25, 2015

Our daughter was
deemed to die, before she was even born, with Trisomy 18. We fought an uphill battle, fighting for her
rights to treatments and life.
Fortunately, we are at a phase of her life, where her medical
professionals are handpicked (instead of taking whoever would be willing to
help her), and she is flourishing against all odds that come her way.

Years ago, I made
a bucket list for all 4 of our kiddos.
We thought Kayli would have more challenges in marking things off, but
we found instead, that she helped us to see all the things we and others take
for granted and don’t even put on their bucket list. To this day, Kayli has done everything on her
bucket list, which also consists of all things on her brother’s bucket
lists. Kayli and her brothers have done
more in their lives, than many adults have!
My hubby and I find ourselves the challenged ones, as we struggle to
think of things to put on her bucket list, so we feel like we’ve given Kayli a
full life. The pressure was on us to do so,
since the very first time a fellow human being told us that Kayli would only
have a life of suffering and our family of regrets, even while we expressed our
desire to not only give birth to our daughter, but to raise her as we do our
boys. The uphill battle has not been
about raising a child with a terminal prognosis, nor of a medically influenced
childhood….it has been a battle of wills between Kayli and those who had once
not believed in her. It has been a
battle of mind, as the thoughts go through our heads; “is this the last time…”. These thoughts come regularly, as we push
Kayli in a swing, take a walk around the block, celebrate her birthday, sit her
on a pony, take our cheerleader to her brother’s games, or are admitted to the
hospital. As the years go by, the fear
has calmed, but the wonders never cease.

I have been
released of the fear of death, greatly due to the fact that my faith holds me
to the understanding that while it is us who will cry, those who die will be fulfilled
with peace and love, and free of any judgments, challenges, and harm, once home,
with our maker. While I find peace in
Kayli’s, and all of our, imminent death, I find that I’ve refocused on what
Kayli will say of us when she lives within God vs her present state of God
living within her.

I wonder if she
will tell God she knows of our great love for her. Is she proud of the choices we’ve made for
her? As I did as a child, will she
exclaim what she would do differently in a parental role? Will she only remember the great times, or
will she remember lessons learned? Would
she say she wanted one more ride on the roller coaster, or hayride? Would she wish she could have climbed that
tree on her own? Would Kayli sit on
Jesus’ lap and tell him stories of the greatest moments of her life, or cry
because she wasn’t done on earth yet? Will she vouch for us and beg for us to join
her in His kingdom, or will she know of His plan to keep us on earth
longer?

In truth, what will
our boys say? What will we say? In this way, I think Kayli is no different
than we are. We are all children of
God. We are all challenged and we are blessed. We’ve adapted, and we’ve been stubborn. We have struggled, and we have found
peace.

If you were to
look at Kayli today, you would see jaw stabilizers in her cheeks, a trach in
her throat, eyeglasses on her face, a hearing aid in her ear, a feeding tube in
her stomach….and a sparkle in her eyes. You will see a will to live that is stronger
than any other, and a depth to her eyes, that holds the secrets of her will to
live. You won’t see the appreciation for
those who care for her every need, but you somehow know it’s there. If you are open to looking past your
expectations of what Kayli’s life “should be”, you will see the life lessons
that she’s taught so many, as a selfless token of God’s love. You will be Blessed to be in the presence of
a child who could tell God, as she sits on his lap when arriving in heaven,
that she has never caused harm to another, but has only shone them His
love. Kayli is likely to be one of the purest,
who will ever go to heaven. For this
reason, many have called her His angel, on earth. She has been granted the most Blessed of all
lives, to be one of His pure souls, here on earth! She will never sin, as we do. Her life is simple (not complex like so many
in the medical field claim her to be), yet most valued, as she has lived with a
purpose, to share God’s love, unconditionally.
She is not the defective result of a fluke at birth, she is
perfect. She is a gift from God. She is perfect for him, and perfect for us, in every way.

Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥